Day 8

This day isn't even over yet, but it's been not very good at all!  

To start with, this morning Jimmy for whatever reason (and who can know what goes on in a damaged mind?) decided to "help" me by disconnecting his dialysis.  No mask, no sanitizer, and no cap on the exposed catheter~!!  Fortunately (for him), he didn't even disconnect correctly, and left the "pin" still in the catheter ... so at least it wasn't actually exposed to air.  Never the less, the dialysis nurse came out this afternoon and set up his dialysis for tonight with antibiotic in the bag that will stay with him tomorrow.

Earlier today I called the hospice lady.  She said she hadn't seen anything to qualify him, so had given the paperwork to her supervisor.  Great.  After all the worry and encouragement, we find out this.  She called me in the late afternoon (while Doreen was here) to say they denied him.  I'm so depressed - I just feel like we've been thrown away.  I get no help from anyone anywhere anytime.  The kids think coming to visit is "helping".  They have no clue how much I have to do or how stressed I am.  I guess the good part about his mental status is to not worry about anything.

But, one of the advantages of hospice would have been that he'd be allowed to have oxygen even if he didn't qualify by Medicare guidelines.  And yet .. part of why he's turned down is that he's not bad enough off to actually qualify for oxygen.  Is that supposed to make sense???

Doreen, and the dialysis center social worker, Brenda, are going to try to get more information.  I've sent them contact information for the pulmonologist and the coordinator at the transplant clinic.  They want to make sure that the hospice people have adequat information.  But seriously .. I just have a feeling that budget cuts have eliminated us.  We just don't fit in anywhere.  And if I can't get a break, I just don't know what's going to happen.